A Prescription for Compassion

May 28, 2015

Dr. Susan Tolle B.S.’73 is a nationally recognized champion of compassionate care near the end of life.

by Pattie Pace

Photo by Corky Miller

Most people have a sense of what it means to live a good life, but what does it mean to die a good death? Just a few decades ago, most people died at home, often after several years of care by a family member—usually a daughter. Today, more and more people experience aging and death in a hospital or nursing home setting. In their last days, many are kept alive by advanced technology. But often these measures come at a high physical and emotional cost to the dying individual, his or her family, and the attending medical staff. All are left to ponder, “Is there a better way to die?”

That question can be particularly challenging when a seemingly healthy person dies unexpectedly, leaving behind a wake of shock, fear, anger—and sometimes lawsuits.

Dr. Susan Tolle B.S. ’73 faced that struggle on October 1, 1981 —her first day on the job at Oregon Health & Science University (OHSU) in Portland. As a brand-new faculty member and attending physician, she was supervising residents and interns who were caring for patients.

“A young woman in her early 20s was admitted by an intern just after midnight and found dead at 5 a.m.—before I had a chance to meet anyone on my service,” says Tolle. Nearly speechless, medical staff awkwardly mumbled condolences and handed the grieving husband a pink plastic bag filled with his wife’s personal belongings and obligatory forms to sign.

Distraught and searching for answers, the husband filed a malpractice lawsuit. Tolle ordered an autopsy, which showed the woman’s sudden death could not have been prevented, and OHSU was cleared of any wrongdoing. A medication she had been taking at home had caused a benign liver tumor to bleed and rupture. For legal reasons, Tolle was advised not to contact the husband.

“I was deeply troubled by the way we cared for this family, and by our insensitivity and lack of support for hospital staff,” she says. “The admitting intern was so traumatized, she no longer practices medicine.”

With compassion and determination, Tolle set about to change all that. In 1989, she established the Center for Ethics in Health Care at OHSU. For 25 years and counting, she has worked tirelessly with patients, their families, and key stakeholders in the medical community to reimagine care near the end of life.

Forging a Path to Leadership

A native Oregonian, Tolle was born into a family steeped in the sciences. Her father was a fisheries biologist and her mother a microbiologist. Her sister, Margie Willis B.S. ’75, studied biology at Lewis & Clark and now works as a botanist. Her brother also earned a degree in biology.

For her undergraduate work, she selected Lewis & Clark, a local school with a solid reputation. “I came from a hardworking middle-class family with two younger siblings headed to college,” she says. “I had a fixed allotment of money for my education and needed to spend it wisely.”

Tolle took a minimum of 21 credit hours each semester and graduated Phi Beta Kappa with a degree in natural science—in less than three years. That tireless determination did not keep her from enjoying her college experience. She played tennis and took part in a wide array of campus activities.

“My roommate, Donna Kling Knudson [B.A. ’74], was a physical education and music major and was extremely service oriented,” she says. “Socializing with Donna’s artistic group of friends helped broaden my horizons and my approach to science and problem solving.”

Tolle looks back on her time at Lewis & Clark with fondness, grateful for the opportunity to interact with students from many different cultures and backgrounds. “We were encouraged to look at life from multiple points of view,” she says. “We learned that just because a challenging problem had never been solved didn’t mean that a hardworking team couldn’t solve it.”

She went on to earn her medical degree at OHSU, graduating with honors. She completed her residency in general internal medicine at the University of California Hospitals in San Diego and served for and additional year as their chief resident in internal medicine.

In 1981, Tolle returned to Oregon and OHSU. The focus of her career began to shift in in 1986, when she presented a paper at a national general internal medicine meeting in Washington, D.C. The paper was based on her first end-of-life study. She interviewed 105 families one year after their loved ones had died at OHSU.

Honoring Patients’ Wishes

What is POLST?

POLST is an acronym that stands for Physicians Orders for Life-Sustaining Treatment. It helps give patients with serious illness more control over their care during a crisis. Produced on a distinctive bright pink form and signed by both the doctor and patient, POLST specifies the types of medical treatment that a patient wishes to receive toward the end of life. As a result, POLST can prevent unwanted or medically ineffective treatment, reduce patient and family suffering, and help ensure that patients’ wishes are honored.

The POLST program began in Oregon in 1991, under the direction of Susan Tolle at OHSU’s Center for Ethics in Health Care. Now in its ninth revision, the form is available in 14 languages, including Braille and online versions.

What information is included on the POLST form?

The decisions documented on the POLST form include whether to:

Attempt cardiopulmonary resuscitation

Use high-intensity treatments

Use a ventilator to help with breathing

Provide artificial nutrition by tube

Is POLST required by law?

Filling out a POLST form is entirely voluntary.

Who should have a POLST form?

Doctors say that seriously ill patients and those with chronic, progressive illness should be offered a POLST.

Does the POLST form replace traditional advance directives?

The POLST form complements an advance directive and is not intended to replace that document. An advance directive is still necessary to appoint a legal healthcare decision maker, and is recommended for all adults, regardless of their health status.

Can I change my POLST form?

Yes, you can change your POLST form at any time should your preferences change.

Source: Coalition for Compassionate Care of California.

“We asked what went well and what needed to change,” she says. “Many people who died in the hospital were receiving numerous medical treatments without being offered other alternatives. We saw vast room for improvement.”

Seated in the audience was Dr. Mark Siegler, the Lindy Bergman Distinguished Service Professor of Medicine and Surgery at the University of Chicago and director of the MacLean Center, which pioneered the formal study of clinical medical ethics in the early 1980s. He invited Tolle to accept a yearlong fellowship at the center—which she did.

“While I was in Chicago, I worked remotely with my colleagues in Oregon to write the private foundation grants that funded the opening of the ethics center the day I returned to Oregon in 1989,” she says. That same year, Lewis & Clark honored Tolle as a Distinguished Alumna for her efforts.

OHSU’s Ethics Center

The Center for Ethics in Health Care at OHSU provides a nurturing environment where doctors, nurses, dentists, and researchers learn firsthand how the art of compassion enhances the science of health care. Patients, families, and health care professionals share their experiences to make improvements in teaching, research, outreach, patient care, and health policy.

A centerpiece of ethics center programming is POLST, an acronym that stands for Physician Orders for Life-Sustaining Treatment. The voluntary POLST program allows patients who are frail or have life-threatening illnesses to control the kind of treatments they want—and don’t want—if they experience an emergency medical crisis.

In 1995, under Tolle’s leadership, Oregon launched the POLST program. Since then, it has been endorsed in 17 states and is in development in another 25, says Tolle, as well as in parts of Australia, Singapore, Germany, Canada, and China. “We’re making progress, but except in Oregon, the program isn’t widely available in all health care facilities.”

Oregonians have adopted the program in greater numbers than expected, with more than 100,000 active POLST forms in the state’s registry. “POLST works better than our fondest dreams,” says Tolle.

On April 7, OHSU launched an E-POLST system, which allows health care professionals to electronically record patient wishes, print out a completed form, and automatically enter the form in the POLST Registry, unless the patient wishes to opt out. “This is a major innovation,” says Tolle. “Facilities frequently have incompatible computer systems—and sometimes competing business interests,” says Tolle. “E-POLST offers a centralized place where everyone can ‘talk’ to each other on a level field.”

Culture and Literacy

In addition to POLST, ethics education for medical students is an important part of the center’s mission.

For example, new interns at OHSU who didn’t study in Oregon must enroll in the Death Notification Role Play session. Each intern is tasked with informing a woman that her 55-year-old husband has died suddenly from a heart attack. Local bereavement counselors play the role of the grieving wife. “They teach interns to focus on the family, to communicate with clarity and compassion, and to avoid being defensive about the care they’ve provided.”

Another class, Living With Life Threatening Illness, is taught, in part, by patients—including one of Tolle’s patients, Bob Samuels, who has battled leukemia for almost 12 years. He signed on as a patient-teacher after seeing family members with terminal illnesses struggle to communicate with hospital specialists. “My brother-in-law knew he was not going to survive, and he wanted palliative care,” Samuels says. “We had to argue to get basic things like Tylenol. They were worried it would mask a fever.”

Advocating for Compassionate Care

In November, Tolle received the 2014 MacLean Center Prize in Clinical Ethics for her pioneering work in end-of-life care. Many consider it to be the Nobel Prize of her field.

“Doctors need to learn to actively listen to patients without interrupting so that they feel respected and heard. Small kindnesses like holding a person’s hand and really listening when they are overwhelmed can make all the difference.”Dr. Susan Tolle B.S. ’73

On the occasion of the award, her early mentor, Dr. Siegler, said that Tolle “has transformed the care of dying patients in the U.S.”

The MacLean Prize included a $50,000 award, the largest in the nation for clinical medical ethics. In her characteristically generous fashion, Tolle donated the funds to the OHSU Center for Ethics in Health Care.

“The prize is for the total impact of the work I’ve done with hundreds of health care professionals across Oregon and our philanthropic partners who make it possible,” she says. “That’s why I donated it to the ethics center.”

Tolle champions compassionate communication as the driving force that will elevate the future of medicine. Doctors need to learn to actively listen to patients without interrupting so that they feel respected and heard. Small kindnesses like holding a person’s hand and really listening when they are overwhelmed can make all the difference.

“We’ve been flying below the radar for years doing important work at the ethics center,” says Tolle. “Now that we’ve been discovered by the world, our work is really just beginning!”

Pattie Pace is a former Oregonian who now writes from Ohio.

Tolle’s Extended Legacy Family

When Daniel Tolle B.A. ’07 (Susan’s son) and Lindsay McIntosh B.A. ’07 married in 2008, two legacy families celebrated the couple’s union and the synergy of their contrasting fields of study. Over the years, Daniel’s family has thrived in the pursuit of science and medicine, while Lindsay’s has embraced the arts and education.

“Art and science can inform one another,” says Tolle. “They help us find new ways to see the world and create solutions we previously never imagined. This intersection has been important to my thinking and my work.”

Tolle’s legacy family extends to the late Fred Wilson B.S. ’51, who was her first cousin once removed. Wilson, who died in 2011, was a five-time inductee into the Pioneer Athletic Hall of Fame—as an individual, team member, and beloved coach. Along with coaching football, baseball, wrestling, and golf, he was the college’s athletic director for 17 years.